CML and Hip and Back pain

I, too, have intermittent hip pain, and have been on imatinib for nearly 5 years, with good PCR results. An x-ray showed only "normal wear and tear", and some physio exercises helped a bit. However, as I am 70, I assume it may be more to do with ageing than imatinib! I also get some almost incapacitating cramp-like pains in my hamstrings, which last up to 10 minutes or so, which I do attribute to imatinib. Unfortunately I can't offer any solutions, though.

Olivia

Hi.

I have just come across your post and have had similar issues. Basically I was diagnosed June 2013, 33 years of age and fully fit due to my job. Since diagnosis I was on Imatinib which was doing what its supposed to do, however after knee pain I started to feel hip and upper back pain also. My consultant gave me a treatment vacation and also referred me to a rheumatologist, she ran MRIs, Xrays and a whole host of bloods. All of which came back 'Normal'.

I have now been shifted to Tasigna (Nillotinib) to see if I see some releif. All I can say is I personally don't feel like I used to daily, whether this is meds, CML, or general deconditioning I do not know. I too take 1000mg Glucosamine, Cod Liver and Multi Vitamins, I am hoping its just down to me having a new child, adjusting to TKI treatment, and will right itself with time... my rheumatologist said I should be giving myself 18 month to adjust to everything.

Regarding the hip pain, mine subsided once I heard my MRI was normal, I stretched for 2 month daily and gave it approx 4 month, during this time I did come off Imatinib for a brief period and felt better though.

My personal thoughts are TKI therapy is still in medical terms in its infancy, long term usage may show to be absolutely minimal to the majority over decades but may affect others, as we are all different... apart from having CML. I agree with Sandy, its very reasonable to believe that side effects can manifest in later usage as well as the first few month.

I would suggest speaking to your wife's Consultant about your concerns. However be reassured that other tests have come back normal, her bloodwork and PCR I presume are fine. I am sure her hip pain maybe just temporary thing, my pain was at times keeping me awake at night and felt deep, so I understand that fear.

Hope this helps and take care.
John

Hi Steven.

Sorry to hear your problems and diagnosis of Arthritis from the Rheumatologist, if you don't mind me asking, how old are you? and what form of Arthritis have they said, Osteo or Rheumatoid? I have voiced my concerns a few times with knuckle pain, shoulder, back, hip and knees and get told various information. With regard to Osteo I was told I had 'wear and tear' to my knee. I was told by one Consultant this Arthritis is just 'wear and tear' this was also backed up by a doc and said that another consultant's diagnosis of Arthritis was 'interchangable terminology'.

Put basically I STILL don't know who to believe and just know I am in pain daily and have just come to deal with this. Psychologically though I now fear any long bouts of pain in a specific area or joint and have a phobia of getting MRI results due to fearing any 'Arthritis, go away' results.

I know we all have to be extremely grateful for TKIs... but also I feel we need to question if they're uses also increase your chance of getting other chronic problems... I am only 34!

John

Hi to all..
I was just diagnosed last July 2015. I'm 28 years old. Other than back pain,I was asymptomatic. I am a nurse and I thought My pain is job related. I did some routine blood test bec I was about to go for my annual vacation and then it came out I had CML. I was really scared. I never thought what I felt was due to cml. I'm on glivec 400mg daily. I have also experienced some joint/back/ muscle pain. I had also leg cramps but it was always on my left leg?is that ok?im also confused what pain meds is safe to take. I have a foolish question thou, there is a saying that we should not microwave our food,how true is that?

Hi I was diagnosed back in 2003 and was on Imatinib up until 15 months ago with a gradual reduction from 400 to 300 to 200mg over a period of about 4 years.(My own trial). My latest pcr is 0.004 I suffered over the years with knee and hip joint pains mainly, but since I've been off tki's I now suffer with finger joint pain also still some hip pain. I have had x-ray's of various parts of my body and all look ok. Bloods taken for RH and that was ok. It has now been recognised that withdrawal symptoms of coming of TKI's can increase pain in some people (not everyone). My joints in my fingers, PIP joints are very painful. So it makes you wonder what these drugs have done to our bodies over the years. Most mornings I find it difficult to get down the stairs and I'm only 53!! Anyway at least I'm a live and kicking!!!
Angela

As a result of stopping, 111 of the 200 patients (56%) remained therapy-free after stopping TKIs , and 89 relapsed. Like in the STIM study, most relapses occurred very quickly within the first 6 months. Amongst those 89 patients that relapsed, 76 regainedMMR and 70 returned to MR4 by the time of the report. There have been no progressions to advanced phases. In terms of prognostic factors for relapse, the duration of prior TKI treatment, and having had MR4 for more than 5 years before stopping seemed to have a positive influence, while the depth of molecular response (MR4 vsMR4.5 vs MR5) prior to stopping did not influence the risk of relapse. 31 of the 200 patients experienced stopping-related side effects, mostly pain in muscles, joints or bones, but also sweating, skin problems, depressive episodes, tiredness or weight loss. None of the side effects were very severe (grade 4). Debates are still going on how to manage and prevent those “therapy withdrawal symptoms”. The estimated drug-related savings to healthcare systems in the 8 EURO-SKI countries was estimated to be 7 million Euro.
Angela

I had extreme muscle cramps in my calves, feet and hamstring, turned out my magnesium levels were very low, doctor suggested supplements and after several months the cramps abated